Warning message

This content is filtered. APPPAH membership is required for full access to journal articles.
-A +A
Issue: 
Publication Date: 
December, 2017
Page Count: 
17
Starting Page: 
149
Brief Summary: 

This Australian study was conducted to understand some of the issues involved where a child is unexpectedly born with a cleft lip and/or palate (CLP).  Parents involved in this study had followed their child’s development from birth to adulthood having completed all surgery, and each now involved in the community as adults.

Abstract: 

This Australian study was conducted to understand some of the issues involved where a child is unexpectedly born with a cleft lip and/or palate (CLP).  Parents involved in this study had followed their child’s development from birth to adulthood having completed all surgery, and each now involved in the community as adults. Because these children were now more than 26 years old, many resources available to parents now were not accessible when these children were young, for example, early ultrasound screening. This study found that there were expected parental concerns for each child, particularly when surgery was imminent. These concerns were minimized by the support provided by the relevant health professionals, as well as CleftPals, an Australian cleft lip and palate support group, together with their immediate and extended families support during the difficult times.

References: 

Berger, Z.E., & Dalton, L.J. (2009). Coping with a cleft: Psychosocial adjustment of adolescents with a cleft lip and palate and their parents. Cleft Palate-Craniofacial Journal 46, 435-443.

Bergmann, K.E., Makosch, M., & Tews, K.H. (1980). Abnormalities of hair zinc concentration in mothers of newborn infants with spina bifida. Amerian Journal of Clinical Nutrition 33(10), 2145-2150.

Bille, C., Knudsen, L.G., & Christensen, K. (2005). Changing lifestyles and oral clefts occurrence in Denmark. Cleft Palate-Craniofacial Journal 42(3), 255-259.

Black, J.D., Girotto, J.A., Chapman, K.E., & Oppenheimer, A.J.(2009). When my child was born: Cross cultural reactions to the birth of a child with cleft lip and/or palate. Cleft Palate-Craniofacial Journal 46, 545-548.

Broberg, M., Blacher, J., & Emerson, E. (2009). Editorial for JIDR special issue on resilience and people with intellectual disabilities." Journal of Intellectual Disability Research, 53(Part 12), 955-956.

Cedergren, M. & Kallen, B. (2005). Maternal obesity and the risk for orofacial clefts in the offspring. Cleft Palate-Craniofacial Journal 42(4), 367-371.

Chapados, C. (2000). Experience of teenagers born with cleft lip and/or palate and interventions of the ehalth nurse. Issues in Comprehensive Pediatric Nursing 23, 27-38.

CleftPals. (2013). CleftPals Victoria. Retrieved November 21, 2013, from http://www.cleftpalsvic.com/.

Dukmak, S. (2009). Parent adaption to and parenting satisfaction with children with intellectual disability in the United Arab Emirates. Journal of Intellectual and Developmental Disability 34(4): 324-328.

Durning, P., Chestnutt, I.G., Morgan, M.Z., & Lester, N.J. (2007). The relationship between oriofacial clefts and material deprivation in Wales. Cleft Palate-Craniofacial Journal, 44(2), 203-207.

Fraser, F.C. (1969). The genetics of cleft lip and palate. Montreal: National Institute of Dental Research: 336352.

Gerstein, E.D., Crnic, K.A., Blacher, J., & Baker, B.L. (2009). Resilience and the course of daily parenting stress in families of young children with intellectual disabilities. Journal of Intellectual Disability Research, 53(Part 12), 981-997.

Gahassibe, M., Bayet, B., Revencu, N., Verellen-Durmoulin, C., Gillerot, Y., Vanwijck, R., Vikkula, M. (2005). Interferon regulatory factor-6: a gene predisposing to isolated cleft lip with or without cleft palate in the Belgian population. European Journal of Human Genetics, 13(11), 1239-1242.

Henly, D., & Nixon, P. (1997). Nutrition in pregnancy.  Retrieved February 22, 2006, 2006, from http://glorey.biosci.uq.edu.au/GMC/nutpreg.html.

Holditch-Davis, D., & Shandor-Miles, M. (2000). Mothers' stories about their experiences in the neonatal intensive care unit. The Journal of Neonatal n Nursing 19(3), 13-21.

Hozyasz, K. (2010). The search for risk factors that contribute to the etiology of non-syndromic cleft lip with or without cleft palate (CL/P) in the Polish population. Pediatrics Polska 85(6), 609-623.

Hyman, M. (2014). Overfed and undernourished. Retrieved July 13, 2017, 2017, from http://www.huffingtonpost.com/ dr-mark-hyman/malnutrition-obesity_b_1324760.html.

Jackson, K., Ternestedt, B.M., & Schollin, J. (2003). From alienation to familiarity: Experiences of mothers and fathers of preterm infants. Journal of advanced nursing 43(2), 120-129.

Johansson, B., & Ringsberg. K.C. (2004). Parents' experiences of having a child with a cleft lip and palate. Journal of Advanced Nursing 47, (165-173).

Nelson, P.A., Glenny, A.M., Kirk, S., & Caress, A.L. (2011). Parents' experiences of caring for a child with a cleft lip and/or palate: A review of the literature. Child: Care, Health and Development 38(1), 6-20.

Nelson, P.A., Kirk, S.A., Caress, A.L., & Glenny, A.M. (2012). Parents' emotional and social experiences of caring for a child through cleft treatment. Qualitative Health Research 22(3). 346-359.

Nicolaou, M., Rosewell, R., Marlow, N., & Glazebrook, C. (2009). Mothers' experiences of interacting with their premature infants. Journal of Reproductive and Infant Psychology 27(2), 182-194.

NVIVO. (2015). Software for qualitative data analysis - 2015.

Ogilvie, L. (1990). Hospitilization of children for surgery: The parents' view. Children’s Health Care 19(1). 49-56.

Perko, M. (1986). The history of treatment of cleft lip and palate. Progress in Pediatric Surgery, 20, 238-251.

Pilnick, A., & Swift, J.A. (2010). Qualitative research in nutrition and dietetics: Assessing quality. Journal of Human Nutrition and Dietetics, 24(3), 209-214.

Sale, J.E.M., Lohfeld, L.H., & Brazil, K. (2002). Revisiting the quantitative-qualitative debate: Implications for mixed-methods research. Netherlands: Kluwer Academic Publishers.

Sayetta, R.B., Weinrich, M.C., & Coston, G.N. (1989). Incidence and prevalence of cleft lip and palate: What we think we know. Cleft Palate Journal 26(3), 242-248.

Uriu-Adams, J.Y. & Keen, C.K. (2010). Zinc and reproduction: Effects of zinc deficiency on prenatal and early postnatal development. Birth Defects Research, Part B, Developmental and reproductive toxicology 89, 313-325.

Wallace, G.H., Arellano, J.M., & Gruner, T.M. (2011). Non-syndromic cleft lip and palate: Could stress be a causal factor? Women and Birth 24(1), 40-46.

Wallace, G.H., & Mattner, H. (2017). Growing up with a cleft lip and/or palate - A qualitative study. Journal of Nursing and Women's Healthcare, J113.

Zucchero, T.M.,Cooper, M.E., Maher, B.S., Daack-Hirsch, S., Nepomuceno, B., Ribeiro, L. … Murray, J.C. (2004). Interferon regulatory factor 6 (IFR6) gene variants and the risk of isolated cleft lip or palate. New England Journal of Medicine, 351(8), 769-782.

To speak with a representative about our products and services or for technology inquiries, please call 1-720-490-5612.